The first World Duchenne Awareness Day (WDAD) took place on 7th September 2014 and is an international event whose main goal is to raise awareness of Duchenne muscular dystrophy and the importance of early diagnosis and daily therapy.
In 2019 Bring your light to the world for World Duchenne Awareness Day!
This initiative is, year after year, becoming so impactful involving more than 40 countries, around 70 organizations and for the second year is celebrated under the High Patronage of The European Parliament. Having Pope Francis acknowledge WDAD to make it more powerful. WDAD 2016 will be focused on Early Diagnosis: identifying and communicating early signs of Duchenne in order to guarantee a good quality of life to the children. Although some studies show a slight improvement in the age of diagnosis of Duchenne there continues to be a delay on average of around 2 years in terms of diagnosing through a health professional and in obtaining a CK test after parents have seen the first signs. To reduce these delays, neonatal screening for Duchenne is instrumental but so far it is only available in a few countries. Early recognition of the obvious signs is the best instrument we have at the moment. Delayed gross motor milestones, Gower’s sign, and delayed speech should raise a red flag and be followed up by a CK blood test as soon as possible. Early diagnosis of Duchenne will allow for timely access to genetic counseling, standards of care, and opportunities for clinical trials.
Through video’s the world will be informed about the Early Signs of Duchenne Muscular Dystrophy and the importance of Early Diagnosis.
World Duchenne Awareness Day is initiated by United Parent Projects Muscular Dystrophy and made possible by the Duchenne community worldwide. All materials are made by parents, neighbors, friends.